Hey all I have a question.

I am now almost 6 months out from rt. So last night I ended up with a strange swelling in my chin, hurts like hell and it extends down my neck. I am thinking it could be a messed up nerve. I called the oncologist I will see her Wednesday. She told me on the phone some times after rt you can getting swelling. Isn't this odd? But I think this is a nerve my ent was concerned with when I started Rt about it tightening? quess we will find out I am supposed to have my ct in 2 weeks?
Hi Pam

Is the swelling under your chin? I've had a swelling under mine for a few months now, but it is now not so noticable. I think its called 'dewlap' and is a late side effect of radiotherapy. It also feels hard and tender to the touch.

Best wishes
Wendy
Hi all,

Had my 6th month post radiation follow up CT. It is clear in the head, neck and tongue area but, there are spots on my lungs according to my oncologist. But since the scan only got the top of my lungs I have to have another CT and Pet scan next week just make sure I am fine. She said it could be an infection. But wants to make sure. Any one else ever had this happen?

Pam
Well the oncologist called me this afternnon while cooking diner for a family get together at my house. She told me the second ct and pet scan is showing cyst like absesses on my lungs. In the top she wants me to have a biopsy this wednesday she said 50/50 chance that it is cancer.

Has anyone had this happen after having tongue cancer and one lymphnode. She says the original areas are all negative.
Dear Pam,

Sorry to hear that you are going through this worry again. I quite often lurk on the American OCF website and it seems that quite a lot of people have things show up on lung scans that often arent anything to worry about.

Good thing is that your team are taking it seriously and doing a biopsy. I hope it turns out to be nothing to worry about.

Will be thinking of you
Cathy
Hi Pam

I've known of other people who've had needle biopsies for kidney and other problems, but I've never had one myself. One piece of advice I've always heard was to have someone with you--you're not going to be up to driving home afterward, and if any special instructions are given, it'll be easier for them to remember.

Hoping for the best!

Julia
Dear Pam
I can't believe this terrible news. You must be reeling from the shock of it. I have no words, I'm sorry.
Please know that I am thinking of you and sending you all my love and positive vibes. It's might not be anything practical but I hope it gives you comfort to know that someone down here at the bottom of the world is rooting for.
Hang in there and as Trevor would say "Stay strong".
Keep us posted as to where you go from here.
Love
Deborah
Hello Pam

So sorry to read your posting.

I have some info that might be of interest to you.

There is a German doctor who has been very successful in treating lung mets using a very special laser.

I am putting a link in so if you wish you can take a look there is quite a bit of info relating to patents quite a few from the USA.

Dr Rolle

I hope the above is of help, lots of other info on the net about him he is a bona fide expert on lung mets.

Wishing you all the best.

Kindest regards


Tony
Dear Pam,

I am so, so sorry to read this devastating news. I hope that surgery may be an option for you. I recently came across some articles that suggested surgery for SSC that has spread to lungs can be successful.

You will be in my thoughts.

Warm regards,

Cathy
Hi Pam,

Hang in there. They have found the problem in the lungs so let's hope early treatment will sort it out.

There was a guy on this site sometime ago who was in a similar situation, I will try and search to see what I can find.

There is always hope - wishing you all the very best

Ken
Pa I know you may feel like this is a death sentence at the moment, and I have been there with mom, but I have been doing some research and its not all bad news, look at this

"Squamous cell carcinoma lung cancer or epidermoid carcinoma is a slow-spreading, slow-growing disease that develops in the central parts of the lungs. These tumors of epidermoid carcinoma can be confined to the lungs for years before they begin spreading outside of the chest cavity-making it much easier to treat squamous cell lung cancer than some other types of cancers"

"for patients who are diagnosed and treated early, the 5 year survival rate can be as high as 50 percent"

It seems they have caught yours in its very early stages I would imagine, witin the last 6 months, so keep hopeful and never give up.

Best love Oliver
Dear Pam,

I am glad Oli found that quote. I too have found evidence from patient studies that found 5 year survival rates for patients that were able to have lung mets resected were comparable with rates for locally controlled head and neck cancer.

I do recommend that you make contact with people on the oral cancer foundation that is based in the US. Posters there will have a far better idea of the range of options for you and advice about which cancer centres are the best for treating cancer that has spread to the lung. Brian Hill the moderator is extremely well informed.

http://oralcancersupport.org/f...threads.php?ubb=cfrm

There is a poster there called Bill C who recently found out that his tongue cancer had also gone to his lungs and he has been doing research about climical trials. Perhaps it would be good to speak to him?

My thoughts are with you.

Best wishes,

Cathy
Hi Pam, only me again, I was at th hospital today for moms radio (she is in the last week now and has the final dose of chemo tomorrow) and we saw the specialist. I asked him about the disease spreading to th lung, and he said it is not uncoon, and that it can be successfully treated with operations and radio/chemo. just to let you know.

Oli
Thank you for checking into that Oli. I see the doc wednesday afternoon. Had to cancel my dentist appointment and move it two weeks out. I got denied fmla thru my work sincei have exceeded my 12 week maximum in the last 12 months. Well duh I have was out from December 3rd 08 to april 09. So I quess the sooner the doc takes me off work the better. Can't miss anywork for appointments because no fmla.

Pam C.
Hi Pam, yes my mom is having a similar worry, she will go onto half pay in feb, and then SSP in August, and she really does want to return to work. she has her last Radio on Friday, so you guys have any ides when she might be fit to go back?

I take it fmla is some sort of Sickness pay Pam? Dont you hav any other Disability benefits in th US? as you should not be worrying about money at this time.

Oliver
Hi Oliver

FMLA is the Family Medical Leave Act. It allows ”eligible” employees to take off up to 12 work weeks in any 12 month period for the birth or adoption of a child, to care for a family member, or if the employee themselves has serious health condition. (I copied this from a site about the program). The person requesting the leave has to jump through a whole bunch of hoops to prove their eligibility.

You're so right--money is the last thing that Pam should have to worry about at this time. When you're sick here in the US, though, "what seems to be the problem?" seems to come second after "how are you going to pay for this?" I'm hoping for the best from Mr Obama's insurance/health care reform ideas, but I'm also a realist.

I don't know about Kentucky (where Pam lives), but I applied for assistance from the State of Michigan. I was turned down flat because I have no dependents, I wouldn't be incapacitated for a year or more, and--here's the kicker--I had earned too much money the previous year (I spent a good bit of that previous year "between jobs").

All the best for you and your mom, Oliver.

Julia
Hi Julia,

I know the Amerian system is far from perfect, but you really do not want to go to a system like we have in the UK. We have some of the worst survival rates for cancer in Europe, and it is no wonder, because the NHS is so undrfunded peoplee are left waiting months for scans and appointments. My mom had to wait two months to see a consultant and two months for a scan.

And many of the advanced treatments you have in the US we cant have here, because the government considers them too expensive!!! For example it was only after a national outcry that the government allowed woman with breast cancer to have herceptin, and my mom was refused the drug you have to protect the saliva glands during radio, because, you guessed it, its too expensive!

The hospitals in many cases are dirty and out of date, and most of our hospital staff come from obsucure countries around the globe!

Having said that my mom is being treated at a specialist cancer unit which is excellent, but it was just getting her to this point has taken 6 months, and when your talking cancer I think she should have been treated in days or weeks, not months.

So dont let obama fool you that a Universal health Service is some wonderful thing, because if there is no exchange of money, you have very little left to bargain with as a consumer.

Oh I feel better now for moaning!

Pam yes its not an easy battle, but get onto the federal disability people, if you make enough fuss they usually have to stop ignoring you, thats how I have had to be with mom.

Lots of luck and love from the uk.xx

Oliver
I have no wish to hijack Pam's thread, but Oli I don't think it fair to diss the NHS. I too am frustrated that my partner didn't get diagnosed more quickly, but the consultant that took ages to diagnose him would have also been the consultant we would have seen had we gone private so I don't know whether it would have made a difference. But I think some of the crictisms levelled at the NHS as an organisation are actually due to attitudes and capacities of individuals/ not necessarily 'the system'.

I think the NHS is a wonderful institution and that as far as health care goes in this country at least there is some social justice. We all have the option to buy insurance and go private just as they do in the US. Only difference here is that insurance is much cheaper here.

I think we should feel blessed to have many of the staff from other countries working in the system. I lived in the Philippines for years and am always cheered up by the friendly Filipino nurses in our local hospital. They are extremely well educated and have lovely caring bedside manners.

Anyway enough,

I hope Pam's consultation went well. She has been in my thoughts so much today.

Cathy
I totally agree with Cathy on all points. They saved my life more than once and now they pay my wages so I cant knock them. Maybe we could start another thread on the NHS and other countries health care.
Pam, sorry to go off topic on your thread. I hope the consultation went ok. Hagg.
Hello all,

I had my consultation today. I was told stage 4. If I only do chemo then I am looking at two years.

If I go to one of the best Head and Neck facilities and do clinical trials I maybe looking at longer and doctors goal of 20 years till he retires. I was offered Mayo and anderson in houston but that is too far to travel financially and to long to be away from the kids. So we are going to Ohio Stat University where my Oncologist studied.

So after that we will no how often chemo plus the other medicines that are not fda approved.

Thanks,

Pam C.
Well Pam,

Its not the best news in the world, but twenty years is great. there is alot they can still do by the sounds of it and your still young and fit!

Hagg and Cathy, yes I agree there are some amazing aspects to the NHS, but you would have to be blind not to see its faults. And I do think there is an endemic problem with the NHS, the care is no longer there. We have the science but not the care from nursing staff.

I also work in the NHS, well im training to be a nurse, and im determined I will use my knowledge as someone on the patient side to treat patients in the best way.

And as for social justice, money talks Cathy we all know that one. I must say I dont think we should discuss this further here its not fair on the lovely Pam.

Oliver.x
Hi all just an update saw my Ent he was told by my oncologist that it had spread to my lungs. He also informed me why surgery is not an option. It has spread to few different areas in the lungs so they would have to work on more than one area and lung drs don't like that if it was just one upper lobe they would do so. But I go to James cancer center at Ohio State University next monday! Wish me luck!

Pam
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